Lupus

“You are now subscribed to the Take Charge email series! One week from today, you will start to receive weekly emails from our Health Educators on these topics:

Coping with lupus-related challenges
Explaining lupus to others
Finding and asking for the support you need
Identifying and tracking lupus symptoms
Making the most of your doctor appointments
Managing your medication
Identifying symptoms of depression
Planning for pregnancy
Preparing healthy meals
Making physical activity part of your routine
During the series, you’ll also be invited to join LupusConnect, our online community. You can sign up for LupusConnect before the series or while participating.

The Take Charge emails come from support@lupus.org. Remember to add this email address to your list of safe senders.

Before and after the series, we’ll ask you to participate in short surveys. We’ll also continue to connect you to information, resources and services at the Lupus Foundation of America. To learn more about our programs and services now, visit our Programs and Services page.”

Grab the reins: Controlling your life with lupus | Lupus Foundation of America

“Important questions for your doctor when you're newly diagnosed
When you're newly diagnosed with lupus, you have a lot of questions. We created this guide to make sure you don't miss any critical information during those initial visits with your rheumatologist.

Once you get beyond the initial diagnosis, there are other important subjects to discuss with your care team: medications, lifestyle changes, diet and nutrition, or family planning.”

Important questions for your doctor when you're newly diagnosed | Lupus Foundation of America

“Learning to accept your lupus
A diagnosis of lupus remains with you for the rest of your life. And, a diagnosis of lupus also includes periods of feeling well mixed with periods of feeling ill. That is why learning to live with lupus involves making some changes -- physical, emotional, spiritual -- within your family, within your profession, within your social circle. In many cases, these changes will extend to how you define yourself.

But it is important to understand the significant difference between viewing yourself as a person with a chronic illness and viewing yourself as a chronically ill person. People who view themselves as chronically ill are allowing the disease and its limitations to take away a large part of their identity. People who view themselves as having a chronic illness are accepting the reality of lupus as one part of their identity.

You may find a source of strength and growth in the knowledge that you have a chronic illness but also a life beyond it. You may realize that living with your illness has made you more understanding of others whose lives are affected by sickness and pain. You may feel a greater appreciation for things you used to take for granted, such as the love and support of family, or hobbies, work, and activities that give you pleasure.

You may also find that your life and your identity are improved and enriched by sharing your experiences with others who have lupus, whether you volunteer with a local lupus support group or chapter, or help people with lupus in your community by listening or lending a hand.

You may even discover that sharing the knowledge of what to expect from a life with lupus, and what can be accomplished despite lupus, can be a powerful lesson for yourself as well as for others.”

Learning to accept your lupus | Lupus Foundation of America

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LUPUS & YOU: MANAGING RELATIONSHIPS
Date: Wednesday, October 30, 2024
Time: 7:00 PM - 8:30 PM

“We are excited to present our signature education event -- Lupus & You: Answers, Advocacy. Action. This free educational series will bring you the latest in lupus research, disease management, and education - and share ways you can engage in advocacy and awareness in your community.

Join us for our national virtual Lupus & You: Answers. Advocacy. Action. event which will focus on managing relationships. Life with lupus can be a difficult and even a lonely journey. The unpredictable pattern of the disease and invisible symptoms can lead to a lack of support by family, friends, and colleagues. After a diagnosis, people may experience challenges in developing new relationships, nurturing current relationships, and losing close connections. We will talk with experts about ways to work through relationship challenges while living with lupus.”

When: Wednesday, October 30, 2024

7:00 PM - 8:30 PM EST
6:00 PM - 7:30 PM CST
5:00 PM - 6:30 PM MST
4:00PM - 5:30 PM PST

For questions and additional information, contact the host directly.

Lupus Foundation of America

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Understanding Lupus
“If you’ve been diagnosed with lupus, you probably have a lot of questions about the
disease and how it may affect your life. Lupus affects different people in different
ways. For some, lupus can be mild — for others, it can be life-threatening.
Right now, there’s no cure for lupus. The good news is that with the support of your
doctors and loved ones, you can learn to manage it. Learning as much as you can about lupus is an important first step.

What is lupus?
Lupus is a chronic (long-term) disease that can cause inflammation
(swelling) and pain in any part of your body. It’s an autoimmune
disease, meaning that your immune system attacks healthy tissue
(tissue is what our organs are made of ). Lupus most commonly affects
the skin, joints, and internal organs — like your kidneys or lungs.
Who is at risk for developing lupus?
In the United States, at least 1.5 million people have lupus — and about 16,000 new cases of lupus are reported each year. People of all ages, genders, and racial or
ethnic groups can develop lupus. But certain people are at higher risk than others, including:

•Women ages 15 to 44
•Certain racial or ethnic groups — including people who are African
American, Asian American, Hispanic/Latino, Native American, or
Pacific Islander
•People who have a family member with lupus or another
autoimmune disease.

The immune system is the
part of the body that fights
off bacteria and viruses to
help you stay healthy.

What are the symptoms of lupus?
Because lupus can affect so many different parts of the body, it can
cause a lot of different symptoms. Keep in mind that these symptoms
may come and go.
Symptoms of lupus may include:
•Fatigue (feeling tired often)
•Painful or swollen joints
•Swelling in the hands, feet, or around the eyes
•Headaches
•Low-grade fevers
•Sensitivity to sunlight or fluorescent light
•Chest pain when breathing deeply
People with lupus may also have problems with the skin and
hair, including:
•A butterfly-shaped rash on the cheeks and nose
•Hair loss
•Sores in the mouth or nose

Lupus may also cause problems with the blood and blood vessels, like:
•Blood clots
•Low numbers of red blood cells (anemia)
•Fingers and toes turning white or blue and feeling numb when a
person is cold or stressed (Raynaud’s phenomenon)
What kinds of doctors treat lupus?
Most people who have lupus will see a rheumatologist. Rheumatologists are specialists who diagnose and treat diseases in the joints or muscles.

But because lupus can cause problems anywhere in the body, you may
have other types of doctors on your treatment team — for example, a:
•Dermatologist (for your skin)
•Nephrologist (for your kidneys)
•Cardiologist (for your heart)

Other types of lupus
When people talk about lupus, they’re usually talking about systemic lupus.

But there are other types — including cutaneous lupus, drug-induced
lupus, and neonatal lupus. To learn more, check out this resource:
Resources.Lupus.org/Entry/Types-of-Lupus

Lupus is not contagious — you
can’t “catch” lupus or give it to
someone else.

What causes lupus?
No one knows what causes lupus. Lupus
and other autoimmune diseases do run in
families. Experts also think it may develop
in response to certain hormones (including
estrogen) or environmental triggers. An
environmental trigger is something outside
the body that can bring on symptoms of
lupus — or make them worse.
Some common triggers of lupus
symptoms include:

•Ultraviolet rays from the sun or
fluorescent lights
•Certain antibiotic drugs
•Having an infection
•Exhaustion (feeling very tired)
•Stress to the body, like getting
hurt or having surgery
•Emotional stress, like being very busy or
having problems at home.

For more information about lupus, please visit the National Resource Center on Lupus at: Resources.Lupus.org.”

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